My son had an elevated tTG (48) but very few actual symptoms of celiac and a negative biopsy. The primary syptom we're trying to explain is recurrent anemia, which of course could be celiac but could be any number of other things as well.

I am trying to figure out, then, why would the tTG be elevated if he does not have celiac or a gluten sensitivity? Is there anything else that would cause it, or do we assume his body is reacting to gluten in some way even if not full blown celiac? I have read that other autoimmune disorders like rheumatoid arthritis and diabetes can cause elevated tTG's but then one person pointed out that celiac could be manifesting itself as RA.

I have spent all last night and this morning reading medical studies about tTG and I'm more confused than I was. Apparently there are false positives with the tTG, but the various statistics I was reading gave it anywhere between a 71% and 95% sensitivity. Our GI told us ahead of the endoscopy that there was only about a 10-15% chance that the scope would be positive for celiac with my son's tTG in this range, which is moderately elevated. I read one pretty large study of 600 children with GI symptoms or risk factors for celiac disease and/or diabetes or other autoimmune disorders. In that study only 2.6% of the children with GI symptoms and 5.6% of the children with diabetes tested positive to tTG antibodies but all the positives showed celiac disease on a scope. Another study talked about false positives (using the endoscopy as the Gold standard which I know it is not) but also said that all the people who were false positive were then diagnosed with other intestinal diseases or liver disease. So I'm really not sure why the GI downplayed the importance of the tTG so much. After the reading it seems much more likely that celiac is the problem here.

Can anyone help me better understand false positives with tTG?

In another thread the recommendation has been to go ahead and eliminate gluten. My fear in doing that is that we don't really have good symptoms to base whether the gluten makes a difference. I would prefer to have more evidence that gluten is really the problem and eliminating gluten at this point means we won't be able to get more blood work to back up the one positive tTG. It seems like maybe getting additional tests like an IGA and IGG would be helpful. I don't want to be in a situation where we kind of think sticking to a gluten free diet is better but we have no solid proof of that - I think the motivation would be hard without something more convincing.

keep in mind tho- that most Celiacs DONT have ANY gut symptoms.. a study from Columbia University said only 1 in 6 have gut symptoms. so, you shouldnt neccesarily wait for visible side effects to go gluten free.

i dont know too much about false positives.

what about the other tests??? antigliadin, endomysial antibody? these could give u a better picture too..

i have heard that other conditions like liver disease could raise the ttg- but idk- to me it's pretty indicative of gluten intolerance and autoimmune disease.

also good to know that gluten can trigger and aggravate a whole host of autoimmune diseases-

The results of these tests would give a clearer picture of the likelihood of celiac disease.

Positive bloodwork and negative biopsy are not that unusual because many celiacs do not express their symptomatology as GI damage. Some have mostly neurological symptoms such as numbness and tingling in the extremities, gluten ataxia (balance problems), migraine headaches. Some children, especially, exhibit behavioral problems such as tantrums, meltdowns, ADHD, apparent autism spectrum disorders. And then there there are the people who do not tolerate gluten but do not test positive on any bloodwork or the endoscopy with biopsy. So the negative biopsy is not the end of gluten intolerance by any means, although many doctors do not recognize non-celiac gluten intolerance because they were not taught it in school (it is a relatively recent concept).. I myself never had any testing done because I stopped eating gluten to try to help my RA, and when I found out how much better I felt I could never imagine going back to eating it just to get tested (although it did not help my RA)..

Why was your son tested for celiac initially?

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Neroli

"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

Another thing to try is going 100% gluten free for about 2-4 weeks than reintroduce Gluten where your child then is fed foods with alot of Gluten like pizza and see whether your child has any negative side effects over the next few days. Try this a few times and you may have your answer. Going Gluten Free will generally make your body more sensitive to gluten if you have a problem with it.

The results of these tests would give a clearer picture of the likelihood of celiac disease.

Positive bloodwork and negative biopsy are not that unusual because many celiacs do not express their symptomatology as GI damage. Some have mostly neurological symptoms such as numbness and tingling in the extremities, gluten ataxia (balance problems), migraine headaches. Some children, especially, exhibit behavioral problems such as tantrums, meltdowns, ADHD, apparent autism spectrum disorders. And then there there are the people who do not tolerate gluten but do not test positive on any bloodwork or the endoscopy with biopsy. So the negative biopsy is not the end of gluten intolerance by any means, although many doctors do not recognize non-celiac gluten intolerance because they were not taught it in school (it is a relatively recent concept).. I myself never had any testing done because I stopped eating gluten to try to help my RA, and when I found out how much better I felt I could never imagine going back to eating it just to get tested (although it did not help my RA)..

Why was your son tested for celiac initially?

He was originally tested in an attempt to figure out why he has been anemic several different times in his life. As I have been researching celiac and gluten intolerance he has several of them (meltdowns, cold hands and feet, decreased attention) but all of these can also be explained by the anemia itself.

The only testing was the tTG. The GI had already planned to do an endoscopy and colonoscopy before we got the positive results because he wanted to look for several other things. But nothing showed up on the scope, so his advice now is to wait 3 months and then follow up with blood work. Not sure whether he is planning to do a full celiac panel at that point but I may either ask him for one or ask the homeopath we are going to see next month to do it.

He was originally tested in an attempt to figure out why he has been anemic several different times in his life. As I have been researching celiac and gluten intolerance he has several of them (meltdowns, cold hands and feet, decreased attention) but all of these can also be explained by the anemia itself.

The only testing was the tTG. The GI had already planned to do an endoscopy and colonoscopy before we got the positive results because he wanted to look for several other things. But nothing showed up on the scope, so his advice now is to wait 3 months and then follow up with blood work. Not sure whether he is planning to do a full celiac panel at that point but I may either ask him for one or ask the homeopath we are going to see next month to do it.

As long as he hasn't been gluten free yet there is no reason to wait to do the blood tests. Your doctor should be able to let you pick up or call in the lab request without waiting for an appointment. As mentioned false negatives on the scopes are not unusual, do you have the results of the scope in hand? If so post them as some doctors are not as knowledgeable as they should be on the changes that can be there before full villi destruction. There is no reason to let your child suffer for another 3 months before the blood work. Since he has already had the scope it would be a good idea to give the diet a good strict try after the blood work is drawn.

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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying "I will try again tommorrow" (Mary Anne Radmacher)

celiac 49 years - Misdiagnosed for 45Blood tested and repeatedly negativeDiagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis All bold resoved or went into remission with proper diagnosis of Celiac November 2002 Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56Twin brother died as a result of autoimmune liver destruction at age 15

He was originally tested in an attempt to figure out why he has been anemic several different times in his life. As I have been researching celiac and gluten intolerance he has several of them (meltdowns, cold hands and feet, decreased attention) but all of these can also be explained by the anemia itself.

The only testing was the tTG. The GI had already planned to do an endoscopy and colonoscopy before we got the positive results because he wanted to look for several other things. But nothing showed up on the scope, so his advice now is to wait 3 months and then follow up with blood work. Not sure whether he is planning to do a full celiac panel at that point but I may either ask him for one or ask the homeopath we are going to see next month to do it.

you DO know that Anemia is a majorly classic symptom of Celiac. it is SO classic. just like B12 & D deficiencies. i was shocked actually that i did not have any anemia.

i CONCUR with ravenwood- no need to be suffering- if your son is eating gluten- he can get a test ASAP- and a FULL panel- (look at my signature).. if a doc had ONLY tested my TTG or ONLY tested my Antigliadin- they would have written me off as NONCELIAC.

**also- if the doc didnt "see" anything in the "scope"- that doesnt mean there wasnt damage- he would have had to have taken 6 biopsies from different areas- and then had them tested under the microscope- i wouldnt be surprised if he did not do that- because most dont on a routine scope- even tho it SHOULD be ROUTINE.

You need to find out if the doctor took biopsys (about 6 of them of the small intestine) during the endoscopy because they only can see damage without sending it the lab if its really bad. A tTG test is just one test within a series for a full celiac panel test. You can be negative on the tTG and positive on another.

You need to find out if the doctor took biopsys (about 6 of them of the small intestine) during the endoscopy because they only can see damage without sending it the lab if its really bad. A tTG test is just one test within a series for a full celiac panel test. You can be negative on the tTG and positive on another.

I don't have the written report, but I know he did say they took at least 6 because I asked him about his confidence in the negative scope results and he said they generally figure if they take 6 samples from different areas that something will show up. He said ahead of the scope that it was unlikely they would see any damage and we would need to wait for the biopsy results to know anything. The scope was done at one of the best children's hospitals in the country, so I'm pretty confident they followed all the most recent recommendations. And the GI was most suspicious of celiac disease at the time of the scope (more than any other possibility). From the way he was talking he was committed to finding evidence for celiac disease if it was there.

I'm going to request the report and see if they will order the full panel. I had asked the nurse previously if tTG was the only thing they tested and she said they generally do both tTG and IgA but in this case they didn't do the IgA. I'm not sure why they don't generally do the rest. Is there some controversy about the other tests in the panel which would explain why some doctors don't like them? Also, is there a benefit to using one lab over another? If so I think I should go through the GI and use the children's hospital lab rather than going through the Naturapath. But it might mean waiting til I can sit down with the GI and give my case why he needs to order the full panel.

We do plan to do a trial off gluten, but I want to exhaust all the testing options before we do that because I really want a diagnosis. My son isn't uncomfortable, and his behavior is improving as his anemia is resolving. Generally he is a very happy, strong, healthy appearing child. I don't want things to drag out though so I really appreciate all of your thoughts so I can figure out the right questions to ask and the right things to do to get that diagnosis ASAP.

He was originally tested in an attempt to figure out why he has been anemic several different times in his life. As I have been researching celiac and gluten intolerance he has several of them (meltdowns, cold hands and feet, decreased attention) but all of these can also be explained by the anemia itself.

The only testing was the tTG. The GI had already planned to do an endoscopy and colonoscopy before we got the positive results because he wanted to look for several other things. But nothing showed up on the scope, so his advice now is to wait 3 months and then follow up with blood work. Not sure whether he is planning to do a full celiac panel at that point but I may either ask him for one or ask the homeopath we are going to see next month to do it.

Anemia and all of the other symptoms you listed are concurrent with thyroid disease..which is associated with Celiac Disease. I have Hashimoto's thyroiddisease, along with Celiac, and I have become anemic when my thyroid hormone becomes too low. Thyroid hormone is necessary for red cell production. Thyroid disease can also elevate tTg. Just something to keep in mind...

Anemia and all of the other symptoms you listed are concurrent with thyroid disease..which is associated with Celiac Disease. I have Hashimoto's thyroiddisease, along with Celiac, and I have become anemic when my thyroid hormone becomes too low. Thyroid hormone is necessary for red cell production. Thyroid disease can also elevate tTg. Just something to keep in mind...

Interesting. I didn't know that about hypothyroid causing anemia or elevated tTG. Thanks for the tip.

I did a quick google search and didn't see anything about thyroid and tTg that wasn't linked to Celiac. Do you have a source for your info?

I have seen 2 doctors, one a thyroid physician and the other a hematologist, who both told me that elevated tTg can also be seen with Hashi's, autoimmune liver disease, Chron's..to name just a few. Not everyone with these diseases will have Celiac, either, although the number is high. That's why any good doctor would also check for these diseases with an elevated tTg and not just Celiac. We all know how that goes.

I had elevated tTg levels for awhile, although they were in the "high" normal range. My testing for gluten ingestion came out perfect so I wasn't eating anything I shouldn't be. The only thing that aroused suspicion was the fact that my thyroid antibodies were still very high, even after following the gluten-free diet for awhile. Then, at the 5 year mark, I had my thyroid antibody testing re-done and it finally was back in the normal range. That was quite a milestone as my thyroid antibodies were 1200 at time of diagnosis with Celiac, when normal is under 40. They re-tested my tTg and it came back at 1. This all took 5 years to accomplish because I was so sick with both Hashi's and Celiac. Once my thyroid antibody was under control, the tTg dropped also. Hashi's will elevate tTg so thyroid testing should be included with a Celiac panel, especially if the Celiac panel comes back negative.